As more people with CCSVI are being treated with angioplasty, increasing numbers are asking about both short and long-term aftercare.

While short-term aftercare typically focuses on monitoring the effects of any medications prescribed after treatment, and any unexpected physical changes/discomforts, there is no universally recommended longer-term aftercare. In fact, physicians often hesitate to recommend long-term aftercare because such programs have not been formally defined or tested.

However, many physicians are willing to work with patients to help develop reasonable longer-term aftercare that emphasizes both vascular and whole-body health. The goal of CCSVI Alliance's Aftercare page is to provide a menu of research-based aftercare activities from which a patient, together with their medical professional, may craft an individualized, common-sense plan that emphasizes both short-term medical monitoring and longer-term vascular and whole-body health.

2. Immediate Aftercare – Medical Monitoring

Following angioplasty, physicians typically focus on monitoring the patient's immediate physical health. Physicians generally believe there is a "risk window" for patients that is highest during the procedure and in the first few hours after treatment, but that quickly decreases over the next several weeks to a month or two. Thus, to many physicians, aftercare consists exclusively of critical medical monitoring during this risk period. Typical risk-based aftercare programs include:

Monitoring for any/all post-procedure medications and related physical parameters (for example, ensuring the patient is taking their blood-thinner regimen and having their coagulation/clotting levels monitored according to a set timeline)

Beyond these critical activities, many physicians don't recommend any long term post-procedure care other than generalities about smoking and excessive drinking (and other behaviors that are obviously bad for your health). However, patients often wish to understand various general risks to their vascular system, and steps they can take to achieve optimal vascular health following CCSVI treatment.

In fact, research suggests that patients can take a number of steps to maintain or strengthen their vascular health. Further, research has tied many of these steps to improved overall physical health, and in some cases, to reduced risks associated with MS. However, before considering a long-term vascular health program, patients must know that, at this time, no research has been conducted showing that any activity or program will prolong the effectiveness of CCSVI treatment or reduce the risk of restenosis.

While several studies have confirmed the general safety of CCSVI treatment1,2, excessive blood clotting (or its opposite: excessive bleeding or bruising) is a legitimate risk for several weeks to a month or two after angioplasty. Thus, a good aftercare program begins with understanding and managing your blood clot risk prior to treatment.

Many factors may contribute to the risk of clotting or bleeding. These include:

• Characteristics of the vein(s) and obstructions being treated

• The type of treatment (for example whether stents or balloons or both are being used)

• The patient's natural propensity for clotting

Fortunately, your natural propensity for clotting (known as your "clotting factor," or "coagulation factor") can be tested prior to treatment. Knowing your clotting factor can be extremely helpful to your aftercare program because it allows your physician to better tailor your post-procedure medication(s), dosages, and timelines based on your individual clotting risks.

While the risk of clotting due to angioplasty is low, your personal coagulation factor may increase post-procedure clotting risks:

Those with a "low" coagulation factor are at risk for increased bleeding or bruising

Those with a "high" coagulation factor are at risk for increased post-procedure blood clotting (also called "thrombosis")

The risk of excessive clotting or bleeding ranges from relatively negligible to, in extreme cases, issues that could be life-threatening if not properly monitored and treated. If you have a coagulation disorder, its best to know it and plan for it prior to treatment.

Managing Blood Clotting after Treatment

Traditionally, two classes of drugs are used to manage clotting:

Anticoagulants

Antiplatelets

While both of these medications are sometimes referred to as "blood thinners," they are really anti-clotting medications, and they work differently to prevent clotting.

Anticoagulants, which include commonly prescribed post-CCSVI treatment drugs like Warfarin, Coumadin, and Heperin, work by inhibiting blood clot formation.

When you are on an anticoagulant, you need regular blood checks to monitor your PT time/INR. There is a specific "zone" of anticoagulation your doctor will want you to remain in for several weeks up to two months after your procedure. PT Time/INR is a simple blood test that can be done in a GP's office once a week or so.

Furthermore, many doctors are now prescribing Pradaxa, which is an anti-coagulant, but does not require regular INR testing.

Antiplatelets, which include aspirin and plavix, help stop platelets from adhering to an area of the vessel wall after it has been irritated or injured during ballooning or stent placement. Platelets are naturally occurring "sticky" cell particles that move freely in your blood where they can adhere to any damaged area in the vessel wall. These sticky platelets clump together to begin the clotting process. Too many platelets, however, can spur development of unwanted clots, and too few may increase bruising and bleeding.

Generally, antiplatelets are considered less risky than anticoagulants, and their use does not require weekly blood checks. Nonetheless, there can be side effects such as bruising and excessive bleeding. Because antiplatelets work differently from antigoagulants, they are not a replacement for anticoagulants. Some doctors prescribe both, others one or the other. Talk to your doctor. Ask them why they use a particular method.

Additional details about anticoagulants, including drug names, risks, and drug interactions, is available here.

A nice overview of coagulation and clotting in clear language is available here.

To determine whether you have uncommonly high or low blood coagulation factors, you may request that your physician have your blood coagulation factor tested prior to treatment. One of several tests is commonly used:

PT time and INR (Prothrombin Time and International Normalized Ratio)

PTT (Partial Thromboplastin Time)

D-dimer

An explanation of what these tests mean and how they work can be found here: PT & INR and D-dimer.

Beyond requesting a test for your blood coagulation factor, it's best to work with your physician on your aftercare plan prior to treatment. Some basics that you may want to ask your doctor:

What is your physician's typical aftercare plan -- how many follow-ups, where, when, with whom, and for how long post-treatment will aftercare be needed?

What medications does he/she typically prescribe post-procedure?

How will the meds be monitored (how, where, and by whom)?

What types of physical experiences are normal and may be expected after treatment?

What types of physical changes are not normal and should be reported immediately, and how and to whom should they be reported (get names, phone numbers, etc.)?

What should you do if you suddenly feel ill or faint?

Will your physician work with you to create a longer-term post-treatment vascular health plan?

Note that because everyone's treatment is unique, your immediate aftercare program may also be unique.

4. Beyond Medical Monitoring: Longer-term Vascular Care

Longer-term aftercare may focus on augmenting the immediate post-treatment emphasis on medical and physical monitoring with longer-term strategies for optimizing your vascular and whole-body health.

Prior to treatment (if possible), patients seeking to optimize their vascular function may want to work with their physician(s) to craft a long-term aftercare program. Research suggests that the following items may be helpful to those looking to optimize their vascular and whole-body health:

While maintaining proper hydration may seem obvious, many people still do not adequately hydrate. Gastroenterologists often recommend 64 ounces of water per day (about 8 medium/large-sized glasses of water). However, your physical size, together with a wide range of factors (e.g. climate, amount of physical activity, altitude, ambient temperature, whether you are pregnant or breastfeeding, and many others) all contribute to how much water you may need. Further, many MS patients have bladder or other physical considerations that may influence their fluid intake. To understand the amount of hydration that is best for you, you may find the following approach helpful:

Remember that you may hydrate not simply by drinking water, but by consuming fluids in foods (e.g. fruit and vegetables often contain large amounts of water)

Physical activity. Generally, most physicians recommend little or no strenuous physical activity immediately following treatment. However, the many significant physical and emotional benefits of physical activity for MS patients4,5,6,7,8,9 warrant a conversation with your doctor about when you may begin or resume some form of exercise routine. Specifically, exercise has been show to improve strength, cardiovascular and endothelial function, bladder and bowel function, fatigue, and improve emotional well-being in MS patients.

Beyond returning to your pre-procedure levels of physical activity (or beyond), many patients have found it helpful to work with specialized MS physical therapists after angioplasty. For example, some patients report renewed energy and/or renewed mobility after treatment. However, because patients may be reacquainting themselves with muscles they haven't used in some while, a physical therapist may be able to help avoid injury or overexertion. Further, a physical therapist can help you craft a new and more vigorous exercise routine commensurate with your physical abilities. Note, however, that you should always plan your exercise regimen in conjunction with your treating physician and, whenever possible, your neurologist.

That said, we understand that patients with advanced disability may not be able to engage in many types of physical activities. Below, we provide a list of exercises appropriate for those with mild to moderate disability. Following this list we provide options for those with more advanced disability.

Exercise for those with moderate to light disability:

Patients with moderate to light disability wishing to expand their exercise routine may consider the following:

Stretching: a good method to reacquaint yourself with muscles you haven't used in a while

Swimming, which combines both cardiovascular exercise and muscular toning

Walking or jogging, which provide both strength and cardiovascular benefits

Yoga, which both strengthens muscles and focuses on breathing. Note, however, that some doctors recommend avoiding exercises that will keep the head in a lowered position for extended periods of time. This would include inverted poses in yoga, like headstands. However, yoga positions that maintain upright head and neck posture and do not require stretching or straining treated areas should be fine. As always, ensure that your treating physician reviews your yoga routine.

Weight lifting and weight bearing exercises, but only so long as they are reviewed by your physician and you are careful to breathe consistently during weight training. (Excessive straining or holding your breath and accidentally performing a Valsalva maneuver may be counter-productive. Scroll down in our glossary to see 'Valsalva.')

Considerations for those with advanced disability:

In a 2005 literature review of the effects of exercise on MS patient health,10 Herbert I. Karpatkin PT, NCS, notes, "With greater involvement [of disease progression], ability to exercise may become progressively lessened. The ability to engage in aerobic training via a treadmill... may not be feasible. Conventional resistance training may similarly be infeasible... Cognitive impairment may prevent compliance with exercise protocols. However, none of these factors are truly contraindications to exercise—they may represent reasons why exercise may be difficult, but not reasons that exercise should be avoided. Persons with advanced disease may derive benefit from exercise, but they require a program suited to their current capabilities."

Clearly, those with advanced disability can benefit from exercise. Patients in wheelchairs often benefit from increased arm strength, which can improve mobility, facilitate transitions, and minimize reliance on a caregiver. Moreover, patients with advanced disability who don't get sufficient exercise are at greater risk for chronic issues like obesity, cardiovascular disease, and diabetes.

However, exercise must be feasible and appropriate for each individual's situation. Thus, we don't recommend any single exercise regiment, but instead suggest that those with more advanced disability work with a physical therapist experienced in MS to craft an individualized, goal-oriented plan that considers your particular strengths and weaknesses, defines your long-term concerns, and creates a pragmatic exercise regimen to help counterbalance your disability and maximize your autonomy.

Getting Sufficient Rest. Like getting proper hydration, this may seem obvious, yet many patients may not be getting enough rest. Patients experiencing renewed energy may be tempted to stay awake and enjoy their health for extended periods. However, the body and mind need to slow down. In fact, getter proper amounts of sleep has been linked to optimal endothelial function.11 Further, sleep deficiency is linked with fatigue for MS patients.12 Practicing deep breathing, gentler forms of yoga, meditation, and prayer may also help quiet the mind. And don't underestimate a cat nap (a short nap, often in the afternoon)– even naps as short as 10 minutes have been proven to renew.13 Importantly, if you are having chronic difficulty sleeping (either falling asleep or remaining asleep), you may want to consult a physician specializing in sleep disorders.

In addition to the tips above, which patients may begin immediately to very soon after treatment and continue for years thereafter, patients may want to craft a full-body lifestyle program emphasizing cardio and vascular health. Dr. John Cooke's book "The Cardiovascular Cure" provides an excellent starting point for those interested in understanding their cardiovascular system and how to preserve it. A good primer on Dr. Cooke's approach is available here.

The wide body of research supporting these activities is available in our Endothelial Health Program, which, ideally, should be read in conjunction with the information on this page.

We hope these activities can serve as a "menu" from which patients, together with their physicians, can craft an individualized, long-term vascular health plan that not only augments any vascular benefits resulting from treatment, but that serves as the foundation for whole-body health. As always, CCSVI Alliance welcomes your
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on our aftercare program.